Getting the Electric Chair and Living

As most of you know, I have some mobility issues that come with chronic illness. My body is always at a minimum of 2 on the pain scale, hates moving for long stretches, and has a tendency to keel over.

I bought my first cane more than a year ago, and it helps, but on the really bad days, I still had to stay home. I got a flimsy hospital-style manual wheelchair (“for emergencies only,” I told myself) but I wasn’t strong enough to push it far. I also discovered that Manhattan sidewalks tilt dramatically towards the street…which meant they were always trying to dump me and my wheels into traffic.

There are many different stages of denial that come with long physical illness, and this was one of them.

I needed a real wheelchair.

I put it off and put it off. I tried a Razor scooter, but I couldn’t stay on it. I allowed my social activities to continue dwindling, thinking that if I could just save up some energy, I could still do one or two things. I pushed myself to physical limits (and sometimes injuries) to make it to political rallies and marches, thinking this is important, this is worth it.

Then there was the Science March. My friend, who has a power chair for her severe arthritis and other conditions, brought an amazing sign with the accessibility stick-person in a wheelchair zooming along on it. It said “Science Moves Me.”

That’s her beside me, far left

She was way faster than me. In fact, you’d have to run to keep up with her in that chair. By the end of the march, she was doing all right. I felt like I was dying, nearly falling over on my way off the bus and slogging all the way home. Nobody else seemed to be having trouble. The march wasn’t that long.

She mentioned that I should look into a power chair, which was probably obvious to everyone but me.

So I sat down and had a long think about why I didn’t get one yet.

I could afford one. No one who cared about me would judge me for using it. I just didn’t wanna. It broke down to something like this:

I’m not disabled enough. I have two legs and they still kinda work maybe sometimes

I know that accessibility in this city sucks and traveling would still be hard

Strangers who were weird about the cane would be even more weird

I could inconvenience my friends when encountering the dreaded enemy Stairs

I would suddenly become very short and I’m not used to that

The doorman might give me that awkward sympathy look

I hate being disabled

No, seriously, I hate it

I hate being disabled and I can’t make being disabled feel like fun

I hate it

I hate it

I hate it

So, obviously, we have arrived at the real problem here.

I fought my body over whether or not it was falling apart every step of the way. When I first started getting migraines, I spent more time throwing up than I really had to because I would try to ‘tough it out.’ (For those of you who have never had a migraine, imagine your head exploding…over the course of two or three days. It’s not just a headache. It’s a slow motion gunshot between the eyes, except you survive and get to do it again later.) When I couldn’t physically keep up with friends in college, I developed a caffeine habit to rival Mark Twain’s cigars. Every new symptom that appeared, I would do my best to literally pretend it wasn’t happening.

This only worked until I started losing weight and couldn’t stop. I finally had to quit my day job (working with animals, which I loved). I started seeing doctors. By the time I moved to New York (for better doctors) and saw one who took me seriously, I was 5′ 8″, 103 lbs, and most closely resembled Sally from The Nightmare Before Christmas.

This is fine.

I finally started getting some help, including vitamin shots, and so of course I went back to trying to pretend I was fine. I’m pretty sure the only thing that finally made me stop was that pretending to be fine is exhausting.

So, over time, I’ve made accommodations for myself. I say that I write full time, but honestly, I write part time and spend the rest of the time trying to hold it together. I got the cane. I got a tiny folding camp chair so that I can sit down at outdoor events without risking my inability to get back up. I shower sitting on the floor of the bathtub. I gave up bras. I walk a little slower. Life is easier. It still ain’t easy, and it never will be, but it was more manageable.

If all of those things made life easier, getting a power wheelchair was only smart. I went to Big Apple Mobility in Times Square and rolled out with one that same day. It had cherry red panels (not my style) and was small enough to turn around in most elevators (definitely my style). The battery runs for 12 miles before needing a charge. It has tiny stash bins under the seat, like twin glove boxes.

It has changed my life.

Even just using it to roll around the house, it means I have to stand up and sit down far fewer times each day. My frequent lightheadedness is now rare, and if I do faint, big deal! I’m already sitting down. It’s nice. Cleaning house has gone from a huge and painful chore to an opportunity to go for a joyride around the apartment.

And then there’s outside. Yes, some of the curb cuts suck. Yes, the subway is practically inaccessible. But I can go to the park without using up a full day of energy. I can march without it feeling like a survival challenge. I can take the bus without dreading the walk I’ll have left when I get off. Groceries? Bring it on. I’ve got a lap AND a backpack. I can roll right over to a doctor or dentist appointment, no worries.